My journey with Tiara, week 7…

As Tiara’s seizures continue to worsen, her doctor continues to add, increase and change her seizure medications constantly, but by the age of 2 she had almost gone through every viable medication possible. During this phase of her life, I was in contact with her neurologist constantly. If you have ever had a subspecialty doctor, you know this is super uncommon, unless you have some serious problems. There were days she would seize all day and I would call him and explain what I was seeing and he would direct me to drive straight to his office at UCI so he could look at her. By his office, I mean he was booked in clinic, so he actually had us show up in his private office where he did all his paperwork. Once we arrived, he would exam her, sometimes get her hooked up to the EEG over at the lab, give us a new prescription or tell me to drive her straight to the hospital. I lived in a constant state of panic during this time in her life. I was always trying to diagnose, determine and assess her condition all day everyday. I felt like her life depended on it.

One of the most fascinating and primitive issues a parent faces when they have a child with epilepsy is how the seizures are diagnosed. Of course, there is the EEG, but your child can’t live hooked up to this machine so, as a parent you are expected to remember every little detail about every seizure. The doctors want you to describe each seizure; which way was her head turned, which arm flew up, which way were her eyes looking, how long did her body stay rigid, how long did the episode last, was she postictal after, etc., etc. So while you are completely scared, panicked and concerned for your child during a seizure, you are then expected to catalog every detail. The sad part is if you fail to do this, you are failing your child and their potential to be given the proper medication. You see, the doctors determine what part of the brain the seizure started and traveled to by knowing what the body was doing during the seizure. If you can’t tell them, they don’t know exactly what type of seizure your child had and from what area of the brain it developed so they can’t give the proper medication. It is so much pressure you can’t imagine. On more than one occasion the doctor has asked me, “ Of the 3 seizure medications Tiara is on, which one do you think is the least effective?” Once I decide, we drop that medication and change it for a new one. Seriously, what if I am wrong? My kid will have more seizures? Yes, that is exactly how it works and that is why after 13 years I pretty much think I know more about Tiara, than most of Tiara’s doctors. So much of neurology is a guessing game with a patient like Tiara. The best neurologists know, there is so much they don’t know about the brain, and Tiara always reminds them of this fact. She has always lived outside the norm and what works for most, never works for her.

Luckily, I have learned to give myself a pass if I make a mistake. I know I am only human, and I also know I have done everything in my power to care for her, so if I pick wrong, I pick wrong. As I am sure you can imagine, because of my constant need to assess her seizures I never liked to Tiara be out of my sight. As a result we were both really attached to one another. She liked me and only me to hold her all day, everyday. She was practically never out of my arms during this phase of her life.

That is why it was so shocking when I woke up one morning and I felt odd, different, like how you feel when you are pregnant. Hummm. Not really possible, since Lou had a vasectomy last year, but I always know the moment I am pregnant. I looked at Lou and said, “I think I am pregnant!” He responded, “Well that seems impossible but you do have that look”! The thing is that as you all know by now, I am a rule follower, which is why I forced Lou to actually go back to the doctor’s office several weeks after the vasectomy to give another sample and confirm he no longer had any sperm. So, with that in mind, and the fact that I have never cheated on my husband, how could I be pregnant? He looked at me funny and

said,“ you better go buy a test.” And as you may realize, since I have Trinity, it was positive. A very, very faint plus sign, but a plus sign at that. I freaked out and sent Lou back to his urologist for another fun sample. But this time, the sample came back with a different result. He now had live sperm swimming, unlike a year ago. The doctor was stunned and baffled and later consulted with other doctors and said he had never seen anything like it and could not explain it. Wow, the story of my life. He said the chances of this happening were .02%. He offered to do another vasectomy for free in the hospital under sedation and take a really long section of each vas deferens, but Lou did not think that sounded like a good idea. Well, we now had 9 months to figure out another method of birth control.

As you can imagine, telling all our friends and family was a little awkward because at this time we didn’t even know if Tiara’s Tuberous Sclerosis was genetic or had spontaneously started with her. The odds were 60% it spontaneously occurred but believe me Lou and I got right on completing that genetic testing. Not that I would have ever considered an abortion if I was pregnant with another disabled child, but I needed to prepare myself mentally. Luckily, the results confirmed it had spontaneously started with Tiara, so we our odds of having another baby with TSC were the same as everyone else. Nevertheless, it was a pregnancy fraught with worry.

It was during this same time, I was in a war with the insurance company. Tiara’s doctor kept telling me her only hope of stopping the seizures was for her to get a VNS and yet the insurance company kept denying the claim. Because the Vagal Nerve Stimulator was not specifically approved for children less than five years of age, and Tiara was 2, they automatically denied the claim. I was so frustrated, because I needed help from the neurosurgeon’s office and her neurologist in getting it approved but no one was doing enough. I used to sit at my kitchen table on the computer, with Tiara in one arm and typing with the other hand, writing letters to anyone and everyone. I finally decided that was it, I am going to the press. I contacted the Daily Pilot, and they agreed to profile Tiara and Tuberous Sclerosis for an issue in May because it was National Tuberous Sclerosis month. I then called and wrote to our insurance company and let them know, I already had an article lined up with a local paper and I would go to every news media possible if they did not approve the VNS for my daughter. Guess what, I got the approval. Yeahhhhhh, and so I thought I had climbed Mount Everest, that is how great it felt. Such triumph and a sense of accomplishment knowing my baby was going to be saved. Thank God, I didn’t know then, what I know now. The VNS would not save Tiara, but actually make everything worse.

And so now, I was pregnant, had given away all my baby stuff, was dealing with Tiara’s daily seizures, planning a surgery for the VNS to be inserted and Tabitha was diagnosed with asthma. Tabitha had chronic ear infections as a baby and as a toddler. She then started having regular bouts with the croup cough and now at 8 years old was experiencing case after case of strep throat. Every time she got Strep, she would get so sick, it was unbelievable and would have problems with her breathing. The doctors then realized she had asthma, which made every virus and infection that much worse.

I mean couldn’t anyone give me a break and give me a healthy child? Is it so much to ask for? I prayed my third baby would be healthy. Lou and I were terrified. We knew we weren’t prepared handle a third children financially, emotionally or physically, yet we were having one whether we were ready or not.

Comments

I remember when you told me Lou was getting the snip. I felt sad about it. You are such great parents but I understood your reasoning. So glad the miracle baby came…she truly is…
Interesting to hear about how Tabitha’s asthma came about…I’ll be watching out for those signs in my little ones (the croup that lingers).
It takes a very special person to be able to cope with a child with special needs. Not all of us are capable. I hate to admit it, but I don’t think I could handle it. The responsibility of parenthood can be overwhelming without children who have special needs. You are an amazingly selfless, positive, and high-functioning human being! I enjoy reading your take on life and your sense of humor on it all.

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hi, I’m tiffani

Nothing fake or phony as I blog about my life as a mother and wife dealing with one daughter's daily seizures, autism, mental delay, violence and numerous other medical problems, while trying to raise the other two in a healthy, happy environment. I hope my blog will make you laugh, cry and think about real life issues every time you read a post.